Local Down Syndrome group raises $200k for research

by Viki Gonia from The Doings Clarendon Hills:

‘Funding Futures’ Benefitting: Down Syndrome Research and Treatment Foundation Location: Goose Island Brewery, Chicago Date: Oct. 26 Attended: 500+ Raised: $200,000 Websites: www.fundingfutureschicago.com, www.dsrtf.org

When her son was around three, Western Springs resident Vicki Van Alphen and her husband Dave learned about the Down Syndrome Research and Treatment Foundation, and she realized, “This is important. They are funding research to go beyond traditional therapies. There’s so much that could be possible for our kids that could affect them in their lifetime.”
That connection led Van Alphen to meet many other families in Western Springs with children with Down syndrome, and they all felt the need to help raise funds to support the work of DSRTF. Thus was born Funding Futures for People with Down syndrome. “It was the spark to help us find each other,” says Van Alphen.
Funding Futures held their second annual fundraising event on Saturday, Oct. 26 at Goose Island Brewery in Chicago.
According to Van Alphen, 500 tickets were sold prior to the event, and they expected to let even more in at the door. Final count of attendees was well over 500 throughout the evening. Goose Island was packed.
The first year, Funding Futures held their event in the smaller back room of Goose Island, but the event turned out to be so successful and popular, that they used the entire space for their second annual event.
Emcee Steve Cortes, analyst for CNBC, welcomed supporters to the event and introduced Mike Sands, Goose Island founder and chief financial officer, who presented Funding Futures and DSRTF with a check for $5000. Margie Doyle, who heads the Funding Futures committee, was introduced and gave a moving and tearful speech about finding people who cared to continue the search for new therapies and treatments for Down syndrome.

Misleading claims of 'cure for Down's syndrome'

from Nursing Times:
The Mail Online suggests there could be a “cure” for Down syndrome, saying that scientists have “discovered a way to reverse the learning difficulties caused by the condition”.

It is not apparent from this headline that the research in question was carried out in mice, not people with Down syndrome. The mice had a genetic abnormality that mimics some of the characteristics of Down syndrome in humans. The study investigated the effects of a compound (called Sonic hedgehog pathway agonist, SAG) which the researchers thought might reduce some of the aspects of problems with the brain structure, learning and memory of mice.
When the mice were given SAG at birth, by adulthood they had more normal development in the part of the brain involved with balance and coordination than untreated mice. The treated mice also showed improvements in nerve signalling in a part of the brain involved with memory and spatial awareness. They also performed better on a test of learning and memory. However, SAG treated mice still showed differences in some nerve cell signalling and behavioural tasks compared to normal mice.
It is not possible to correct the underlying genetic abnormality that causes Down syndrome, so talk of a “cure” is misleading.

DSRTF and NDSS Host Special Down Syndrome Awareness Month Webinar

         

from the DSRTF and NDSS:

"We really are on the verge of a revolution," says Dr. Roger Reeves of Johns Hopkins University School of Medicine. As one of the preeminent figures in the field of Down syndrome cognition research, he's in a unique position to know. With almost 30 years of experience in the field, Dr. Reeves has studied DS since his postdoctoral days, when the condition was still believed to be too complex to treat. It's thanks to the sustained efforts of researchers and advocates like Dr. Reeves that we now understand that cognitive improvements for people with Down syndrome are not only possible, but within reach. Those efforts are showing exciting results. With recent advances, Dr. Reeves says, "the game has changed for people with Down syndrome."

Learn what that means for the future on Tuesday, October 16 at 11 AM PT / 2 PM ET when Dr. Reeves joins us for a webinar to discuss current topics in DS research and his own groundbreaking work.

This one-hour presentation is a special collaboration between the Down Syndrome Research and Treatment Foundation (DSRTF) and the National Down Syndrome Society (NDSS) in celebration of Down Syndrome Awareness Month. 

Register now to attend  [LINK: https://www2.gotomeeting.com/register/649840498 ], then join us on the 16th and find out why the future looks brighter than ever for people with Down syndrome.

You can submit questions in advance to be answered as time permits. [LINK: mailto:dsrtf@dsrtf.org?subject=Webinar question for Dr. Reeves ]  

We hope you'll join us on Tuesday 10/16/2012.

Down Syndrome Research and Treatment Foundation's plus15 campaign

From Julie of the Down Syndrome Research and Treatment Foundation:

I'm writing from the plus15 campaign, which is the Down Syndrome Research and Treatment Foundation's campaign to spread the word about Down syndrome cognition research.  DSRTF supports research to improve learning, memory, and speech in people with Down syndrome, with the goal of greater independence and increased cognitive ability for our loved ones.

We're excited about World Down Syndrome Day and have planned a few ways to celebrate.  We wanted to reach out and let you know, in the hope that you might share our excitement and pass the word along to your community.

Here's what we have going on:

• 3-to-1 donation matching on 3/21.  Give to DSRTF on 3/21, and your donation will be matched 3:1, thanks to the generous support of one of our funders.  This is an incredible one-day opportunity to maximize your donation to DSRTF.  Please mark your calendars and give! $15 becomes $60, $25 becomes $100, and every bit counts. You can donate here: http://www.dsrtf.org/donate

• Webinar.  In honor of World Down Syndrome Day, DSRTF is hosting a special webinar with Dr. Roger Reeves of Johns Hopkins University.  As you may know, Dr. Reeves is a leading researcher in the area of Down syndrome, having studied it for over 25 years. DSRTF is a proud supporter of Dr. Reeves’ work, and we hope you will join us for this one-hour webinar about Down syndrome cognition research on Wednesday, March 21 at 10:00 AM PT/1:00 PM ET. Sign up here: http://plus15.webex.com/mw0306ld/mywebex/default.do?siteurl=plus15

• plus15's World Map.  What would an increase in cognitive ability mean to you and your loved one with Down syndrome? plus15 is creating a world map — available here: http://www.dsrtf.org/plus15/3-21map  —  with testimonies, photos and videos to show the world, and our legislators, the importance of cognition research in providing greater opportunity to those with DS.  To participate, send your first name, city/state, a video or a photo, and a note that completes the following sentence:  "A 15 percent increase in cognition means that my (son/daughter, etc.) could _____________."  Upload to our Facebook page at http://www.facebook.com/plus15 or send it via e-mail to julie@dsrtf.org.  Together we'll put Down syndrome on the map.

Grassroots support is essential to efforts like ours, and we count on word of mouth — or in this case, word of blog — to help spread the word about what we do.

You can visit our web site for more info about plus15 and DSRTF, and of course I'd be happy to answer any questions you might have.